Two years ago, when Nujeen Mustafa was sixteen, she left everything she had ever known to travel overland to Europe. Mustafa was one of nearly five million externally displaced refugees fleeing indiscriminate bombardment and humanitarian catastrophe in Syria’s civil war. Unlike most of them, though, she is unable to walk. Mustafa was born with cerebral palsy.

Nujeen Mustafa. Photo: Chris FLoyd

From her hometown of Aleppo all the way to Germany, she went in a wheelchair pushed by her elder sister, Nasrine. It was a flimsy device; the footrest was a piece of tied-on wire. In it she traveled for a month through half a dozen countries, braving border guards, smugglers, the elements, driven by an uncertain hope that they would not be sent back.

In Aleppo, Mustafa grew up in a working-class Kurdish family. They lived in a fifth-story apartment. There was no elevator. As she aged, it became difficult for family members to transport her down the stairs and eventually she stopped venturing out of doors altogether. Mustafa was intermittently homeschooled but mostly she learned things from watching television. Mustafa kept no friends her age. English proficiency was acquired through soap operas. By the time she left Aleppo she had never been on a train, plane, bus or boat.

Mustafa’s journey happened in stages. When her family left Aleppo, they were escaping violence instigated by their government. The Bashar al-Assad regime had heightened a military campaign against the city, Syria’s second largest and home to a key rebel stronghold. They fled to Manbij, another rebel occupied town. They had to leave after Islamic State militants conquered it, enacting a brutal theocracy. Women were forced to wear veils. There were beheadings. By car they crossed into Turkey, where they lived in Gaziantep, a seedy city in the south. Feeling unwelcome, they headed west for Europe.

For those with disabilities, the ongoing refugee crisis is tougher on nearly every level.

For those with disabilities, the ongoing refugee crisis is tougher on nearly every level. Yet despite their vulnerabilities, disabled refugees in the Greek islands, a major refugee bottleneck, are routinely overlooked in receiving basic services, Human Rights Watch reported in January; Shantha Rau Barriga, its disability rights director, described them as “an afterthought” of aid givers.

In the fall of 2016, the UN Refugee Agency announced it was giving special priority to disabled asylum seekers. They would be reserving 20 percent of their refugee housing in Greece for “vulnerable” people; most asylum seekers there live in camps. However, only 30 percent of that housing has been filled by the disabled, HRW found. The reason for this is thought to be Greece’s spotty system of identifying disabled refugees, which UN authorities have admitted has underreported the number of disabled refugees there. They have classified only about one percent of the over 27,000 asylum seekers in Greece as disabled, which is well below the expected estimate of fifteen percent.

Since making it to Germany in September 2015 Mustafa has started attending school for the first time. She is in the ninth grade. She has become a prominent voice for disabled refugees, giving numerous talks on the issue. She has been profiled in several international media pieces. In October, she published a co-authored memoir of her ordeal called Nujeen: One Girl’s Incredible Journey from War-Torn Syria in a Wheelchair. We spoke with her to find out more about her story and activism.

How long you been in Europe now?

I’ve been in Europe since September 2015. The whole journey here took a month. I left in August 2015 and arrived here in September.

Has Germany started to feel like home?

I’m getting Germanized in a sense, yeah. I feel more familiar with the whole system in general. I still feel a bit out of place. Until you learn all about the regulations and laws and how to socially behave, act, you do. But there are still some differences that I’d like to keep. I never wanted my identity to get erased. But I’ve started feeling more comfortable.

You are wearing braces. Did you get those in Germany?

Yes, last November. Hopefully I will get my teeth fixed as well.

How old are you now?

I’m eighteen.

Can you tell us about what life was like in Syria with cerebral palsy?

It was pretty difficult. I was born in the countryside of Aleppo but I grew up in Aleppo the city itself. I went outdoors like once in a year sometimes. We lived in a fifth floor apartment and didn’t have a lift. It was quite difficult, as I got older, to carry me. I did not want to cause much trouble so I gave up on going out. I became an introverted person. There was much loneliness. I had the neighbors, of course, next door, but they either left during the day or were much younger then me. So the side effect of that was that I was a friendless child. I grew up among adults, my uncles, relatives. There were often family gatherings at home. I never got the chance to attend school so I was homeschooled. Just the basics, the alphabet, bit of math, how to read and write in Arabic. Not much was expected from a disabled person in Syria. Special facilities are not as common as they are in Europe. Even if there are schools for the disabled, they’re really expensive. We could never afford it. That’s the reason that I was not attending school.

I was a friendless child… not much was expected from a disabled person in Syria.

My father retired from the workforce long ago. He’s 75. But he was a peasant. He would sell things. But he hasn’t worked in a long time. My mom is a housewife. She was really determined to get an education. She’s amazing at math. She’s amazing at geography. I wish I was half as smart as she is, even though she is illiterate. But she knows a lot. I think it was her determination to get an education that led to me getting my own education as well. My family just refused the idea of disability as an obstacle or an excuse for me to not getting an education.

How did you learn English?

I watched soap operas. With subtitles at first. But then gradually I noticed that I understood without even looking at the subtitles.

Which soap operas?

Days of Our Lives.

In America that’s popular mostly among grandparents.

I guess there’s an exception to everything right? One side effect of not attending school was that the TV became essentially my school as well as entertainment. I was watching it endlessly. I guess that my family did not like it that much but I had pretty much nothing else to do so they let me do whatever I wanted. I was left to watch documentaries. I became an information gatherer, just left to my bit of information collecting, fact collecting. I’m a big fact collector. I became a nerd. I love reading books. I would buy a book and finish it by the next day. I grew up introverted because I did not socialize much.

When did you leave Syria?

We left Aleppo in 2012 and immigrated back to the town where I was born. We were there until the beginning of 2014 when we left to Turkey and stayed there for a year. Then I set off on my journey to Germany.

How did you get to Turkey from northern Syria?

We went to the border and crossed in my uncle’s car. Then we stayed in Turkey for a year but decided that it was time for us to leave because there was nothing on the horizon. My sister could not go on with her education. My brothers could not find a job. Learning the language is difficult enough but as Kurds you are also not really welcomed. Turkey is so much more difficult when you’re a Kurd to get a job or be treated properly. It was not a very welcoming place. So we left because there was nothing on the horizon. For me the image of my future self sitting there doing nothing was terrifying. So when I was presented with this chance I welcomed it.

The image of my future self sitting there doing nothing was terrifying

My brother had left ahead of us and when we learned that the way to Europe was open we decided that this might be our only chance so we did it. We knew that we would soon run out of options if we waited. So we just left. I was sent with my sister to Europe. She’s nine years older than me. She pushed me across Europe. I left with a wheelchair. There was a group of relatives we left with, too. My parents stayed behind in Turkey. We were 38 people in total in the group, with 11 children.

What was the most difficult part of your journey in terms of your disability?

I think when we got to the point before we set off to the Greek side of the shore it was really difficult. Really rocky and hilly. The terrain was really difficult for a wheelchair so I had to be carried a lot. We spent the night there outdoors without shelter. This was at the point where you set off for the Greek side to Lesbos, before the dinghy. That was a really nerve-wracking period because there were a lot of children. We had slept there for a night already and the next day we were out of water. Had we had to spend another night there it would have been really difficult. I think that was the hardest part.

Another great difficulty was when I was detained in Slovenia for a day. We arrived in a bus to a military base. No WiFi or phones allowed. They told us we had to get off the bus. Everyone on the bus started losing their temper. They promised us that we would get out soon but of course we had no way to communicate so we got scared. It was really nerve-wracking because it was not the usual way people went. Normally it would have been Hungary. But the border was closed so we never made it to Hungary. That was a new way, a new route, unknown.

It was a two story building. There was an Iraqi group upstairs who did a hunger strike, or threatened one. There were a lot of ideas among the refugees about that. But it worked. We were released the next day.

That experience made me realize how precious freedom is. We were just detained. We could not go out and we were surrounded by police. It’s not pleasant, feeling unfree. There were people talking on the bus about someone they knew being detained for months, afraid they wouldn’t see the sun again.

No. Starting out, there was a debate whether we should bring the wheelchair or not. The group feared that it was going to puncture a hole in the dinghy. Carrying me would have been much worse because I was not a little girl anymore. I was 16 back then. Imagine what body strength it would take to carry me all the way through. So the wheelchair was quite helpful and I don’t regret bringing it with me. And I would be first in line if there was any queue because of the wheelchair.

From Gaziantep to Izmir, which was the starting point, everything was new–busses, trains, boats–which is kind of embarrassing when you’re already 16. But I considered it as a really good experience. And I would want to tell my grandchildren about something other than the war. I knew that this was a once in a lifetime experience. I did not want to waste it on just being stressed. I wanted to live my age.

The ocean crossing from Turkey to Greece was really your first leg of the journey into Europe. What was that like for you?

On that day things were done so hastily because they wanted to get the boats set off as soon as possible, when the sea guards are changing shift. Otherwise if they discovered you they would turn you back. Once the shift changing began the dinghy sets off all at once, so it’s done very hastily before the guards come back. On the day no one really noticed my wheelchair. I was just loaded into the dinghy.

Did you see many other disabled refugees on your journey?

Oh definitely. Our camp in Greece was filled with them. The main camp was not accessible for disabled people. So I was transported to another camp which was only for special cases and people who are waiting for their Greek residency. So I met some people with disabilities. To be honest I figured out that my situation was the best among them.

Why did you decide to write a book about your journey?

My intention of the book was to give an insight on this problem. When you think of this crisis it seems terribly far away. We as refugees are generally thought of as something on the news, a news report, not as people. I wanted to give people an insight into who we actually are, that we too have lives and want the same things. I wanted people to realize what it is to be a girl, what it is to be disabled, what it is to be Syrian, what it is to leave civil war–that I’m not a number but a real person.

We as refugees are generally thought of as something on the news, a news report, not as people.

My whole life, being so isolated and lonely, I wondered what I could do. I looked for my mission in the world, what influence I can make. Now that I have a voice, that I can speak, I thought maybe I can make a difference. So it’s essential for me to do this kind of activism because we matter. No one’s an extra number in the world’s population. Everyone has come into the world for a mission and I believe that is mine. And I’ll do my best to present that. All of us deserve much better I think.

You have just returned from Madrid. What were you doing there?

Cover of the Girl from Aleppo.

I was attending the annual general assembly of the European Disability Forum. It was an interesting experience, an opportunity to raise the voice of refugees with disabilities in particular and take a look at the general situation in Europe [for disabled people].

Do you have other plans in championing this issue?

I’m planning on starting a fund to focus on how to best help people here in Germany integrate, how to work with society and feel less foreign. I want to share my personal experience with others. I always think of myself as a guest here who has to be good to its hosts. The point of my focus would be to help Syrians in the best way I can but also help Syrians that are here how to best deal with a new society, culture and country.

What is your healthcare like in Germany?

I think we have the best healthcare in Europe. I get physical therapy three times a week. My therapist says that I’m improving, getting much more flexible. The name of my disability is tetra spasticity, which means the four limbs are spastic. We are trying to improve as much as we can but it’s not something that will suddenly go away. I am born with it. I just have to learn how to live with it. Therapy is making me more flexible and learn how to control the spasticity I have and make the best of my limbs to their highest potential, how to not make this disability a barrier between me and normal life.

Do you have an elevator now?

We live in a small house. It looks like a Barbie house. I’m pretty much happy.

We live on the ground floor so we don’t need an elevator. We live in a small house. It looks like a Barbie house. I’m pretty much happy. We live on the outskirts of Cologne. It’s really homey and cozy here, kind of gives you that fairy tale-ish atmosphere. I’m really pleased with where I live now. I have a few friends at school. Especially in my class.

What do you want to study when you go on to university?

I’ve always been interested in the essence of things so I’d love to study physics. Maybe become a scientist. Who knows, maybe an astronaut. I just hate gravity. Maybe I can find an alien and prove Hollywood wrong about the whole thing. They’re not just coming to invade the earth. I think it’s the biggest unsolved mystery. Are we alone? It has always intrigued me. Hopefully I can work on solving it.

Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. By sharing the experiences of these individuals, we hope to change people’s notions about what it means to be ‘normal’.

Editorially independent, Folks is sponsored and published by PillPack. Part of our mission at PillPack is to create healthcare experiences that empower people. We don’t believe people are defined by their conditions. We pay our contributors, and we don’t sell advertising.